CARING FOR THE CAREGIVER
Providing care and support for an autistic child can require a lot of time and effort, but it can also be incredibly rewarding. To make it happen, though, you need to take care of yourself. Take a moment to ask yourself:
- Where does my support and strength come from?
- How am I really doing?
- Do I need to cry? Complain? Scream?
- Would I like some help but don’t know who to ask?
If you want to take the best possible care of your child, first take care of yourself. Parents often fail to evaluate their own sources of strength and emotions. You may be so busy meeting the needs of your child that you don’t allow yourself time to relax, cry or simply think. You may wait until you are so exhausted or stressed out that you can barely carry on before you consider your own needs.
Reaching this point is not helping you or your family. You may feel that your child needs you right now, more than ever. Your to-do list may seem endless. You may feel completely overwhelmed and not know where to start. There may never be a convenient time to care for yourself, but it is essential to build self-care into your everyday life – even if it is just five or 10 minutes at a time. Each family is unique and deals with stressful situations differently. It is important to find the people, activities and routines that work best for you.
Getting your child started in treatment can help you feel better. Acknowledging the emotional impact of autism and taking care of yourself during this time can help prepare you for the road ahead. Maintaining open and honest communication with your partner and family, as well as discussing your concerns, can help you to deal with the many changes in your life.
As some parents may tell you, you may be a better person for it. The love and hope that you have for your child is probably stronger than you realize.
Here are some tips from parents who have experienced these first days of understanding the diagnosis.
Get your child started in therapies and activities. There are many details for you to manage in an intensive treatment program, especially if it is based in your home. If you know your child is engaged in meaningful activities, you can better focus on moving forward. It may also free up time to educate yourself, advocate for your child and take care of yourself. Getting started with therapies and interventions can help to build a team of people who care for your child and want to see them succeed.
Ask for help.
Asking for help can be hard, especially at first. Don’t hesitate to use whatever support is available to you. People around you may want to help but may not know how. Is there someone who can:
- Take your other kids somewhere for an afternoon?
- Cook dinner for your family one night so that you can spend the time learning?
- Pick a few things up for you at the store or do load of laundry?
- Let other people know you are going through a transitional time and could use a hand?
Talk to someone.
Everyone needs someone to talk to. Tell someone what you are going through and how you feel. Someone who just listens can be a great source of strength. If you can’t get out of the house, call someone. Many parents find online groups and communities helpful. You may also want to consider seeking professional help.
Consider joining a support group.
It may be helpful to listen or talk to people who have been or are going through a similar experience. Support groups can be great sources of information about services and providers available in your area. You may have to try more than one to find a group that feels right to you. For many parents like you, support groups offer hope, comfort and encouragement. You may also want to consider getting your child involved in local recreational programs for children with autism. This may be a good way to meet other parents like you.
One way to find support groups is through the local Special Education Parent Teacher Association (SEPTA) in your school district or online through the Autism Speaks Facebook page at facebook.com/autismspeaks.
Trust your gut as a parent.
There are many paths to take, treatment options and opinions. You know your child best. Work with the people in your child’s life to find what works best for your child and your family.
Keep a journal.
Some parents find a journal to be a helpful tool for keeping track of their child’s progress, including what is working and what isn’t. It can help to keep a journal of how you are feeling as well.
The internet can be an important tool for learning about autism and how to help your child. Unfortunately, there is more information on the web than you may have time to read. And there may be a lot of misinformation. As you’re looking for resources, ask yourself these questions:
- Is what I’m reading right now relevant to my child?
- Is it new information?
- Is it helpful?
- Is it from a reliable source?
Share this kit with family members and close friends. Download the kit at autismspeaks.org/tool-kit/100-daykit-young-children.
We also offer tool kits for specific people in your life. Visit: autismspeaks.org/tool-kit for resources for parents, siblings, grandparents and friends.
Take a break.
If you can, take some time away, even if it is only a few minutes to take a walk. Getting out to a movie, going shopping or visiting a friend can make a world of difference. If you feel guilty about taking a break, try to remind yourself that this break can help you feel renewed for things you need to do when you get back. Also, try to get some rest. If you are getting regular sleep, you are better prepared to make good decisions, be more patient with your child and manage stress.
From Overcoming Autism by Lynn Kern Koegel, Ph.D. and Claire LaZebnik, 2014.
You should, you know. Tell people. You don’t have to walk up to strangers on the street or anything, but confide in the people who love you. That was one thing we did right: we told our families and our friends right away. First, we called them, and then we copied a good comprehensive article someone wrote about autism and annotated it with specifics about Andrew, and we mailed it out to everyone we knew. (You could do the same things with sections from this book, by the way.)
None of our good friends pulled away from us because our kid had autism. Just the opposite – our friends and families rallied around us in amazing ways and have continued to cheer Andrew’s progress on year after year. In all honesty, telling people what we were going through only made our lives easier.
Before then, we worried that Andrew’s occasionally aberrant behavior was off-putting. But once he had a formal diagnosis, everyone cut us a lot of slack, and instead of wondering what the hell was wrong with us as parents, most people we knew admitted to a newfound respect for us for dealing with so much.
Real friends don’t love you more for being successful or less for having problems. If anything, it works the opposite way – we’re all so busy that sometimes we forget to stay in touch with friends when everything’s fine for them, but we rush forward when they need us. Now is the time to take advantage of that. Talk your friends’ ears off, complain and moan to them. You’re dealing with a huge challenge; take advantage of every plus it has to offer.
Supporting your other children
As the parent of a child with autism, it may seem like there is never enough time to do everything that needs to be done. So much focus and attention is placed on the child with autism, that it is common for parents to have less time and energy left to focus on their other children. Brothers and sisters of children with autism frequently face their own challenges. Much more may be expected from these siblings. They often need help understanding the emotional reactions they are experiencing as a result of the many changes occurring in their lives. This support is essential to their future well-being. Here are some strategies for supporting your other children:
- Help your other children understand autism and what is going on with their sibling. Talk with them early and often in age-appropriate ways. Many books and other resources are available to help them to understand this diagnosis, including Autism Speaks Siblings Guide to Autism.
- Help your children learn how to play and form relationships with their sibling with autism. There are a few simple things that you can do that will help with this, including teaching your other children how to get their sibling’s attention and give simple instructions. It’s also important to praise all your children when they play well together.
- Find a sibling support group. Support groups can help them build friendships and relate to other peers who have a sibling with autism. Don’t hesitate to consult a professional if you feel your child is internalizing most of their feelings or beginning to act out. The earlier you address this, the better.
Find more about supporting your other children and other parenting challenges in Autism Speaks Parents Guide to Autism.